Looking after yourself

Coping with caring

Introduction

I gave up my job to look after my wife and then as I had no time for my hobbies, I gave them up too. We stopped visiting friends and they stopped visiting us. Two ladies come from the mission every Tuesday afternoon and sit with my mother. I usually go to see a friend at the other end of town and then get some shopping in. When the weather is nice, I sometimes walk back through the park. When I arrive home, I feel refreshed and glad to see my mother. The ladies are ever so nice and aren’t frightened when my mother acts a little strange or lets out the occasional shriek.

Caring for someone with dementia can be both physically and mentally exhausting. Apart from the assistance you provide during the day, you may well find it difficult to get sufficient sleep, particularly if the person wanders about at night. This can take a tremendous toll on your body. As caring is such an intense activity, you might also find yourself becoming more and more isolated from your friends. Even spending a few moments a day on your own may seem like a luxury of the past. You may be experiencing conflicting emotions about the person you are caring for and not have anyone to discuss them with. The prolonged strain of such a situation is likely to lower your resistance to illness and lead to stress, perhaps even depression. You should therefore make sure that you look after yourself. It is not selfish to do so but, on the contrary, essential if you are to ensure that the quality of care you are providing as well as your personal health and wellbeing do not deteriorate.

How to cope with caring and look after yourself

Recognise your own limits and set realistic goals

In attempting to provide the best possible care for the person with dementia, it is important that you realise what you can and cannot do, define priorities and then act accordingly. Avoid setting yourself unrealistic goals which are either impossible to attain or difficult to keep up over a period of time. Putting things into perspective may help you to reduce the strain you are under.

As the German theologian, Dr. Reinhold Niebuhr, wrote in 1934 :

“God, give us the grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed and the wisdom to distinguish the one from the other”

Look out for warning signals

If you have found yourself shouting at the person with dementia from time to time, there is no point worrying and getting it all out of proportion. You are only human and like everyone else, you have your own limits. However, if it is becoming increasingly common, it is a sign that you are having difficulty coping and should seek help before the situation deteriorates. You may have already reached the stage of resorting to physical violence, hitting or pushing the person with dementia. If so, you will no doubt have felt extremely disturbed and perhaps ashamed of your behaviour. However, dwelling on the matter will not help. Your action was most probably directed against the behaviour rather than the person. As any professional knows, although people with dementia cannot control their behaviour and are not doing it on purpose, they can be infuriating at times. Nevertheless, it is extremely important that you acknowledge what has happened as a sign of the tremendous strain you are under and immediately seek assistance. Your Alzheimer’s disease organisation will be able to put you in touch with someone who can help.

Seek the information and advice you need

It is important not to feel intimidated by the people who are in a position to provide you with assistance and advice. Be clear about what you want and if you don’t understand an explanation, get the person to repeat it more plainly and even write it down if necessary. Even if you don’t need a particular service at the moment, it is always useful to find out about what kind of help is available, should the need ever arise.

Make time for yourself

It is absolutely essential that you try to arrange some time off for yourself – at least one day and one night per week. You could ask your family and friends to look after the person with dementia in your absence. As they might be unaware of the strain you are under or not know in what way they could help, it might be up to you to ask. There is also the possibility of organised care, e.g. day care centres, respite care (whereby the person with dementia is taken care of for a short period of time) and residential care (whereby they are taken care of for a longer period of time). Volunteers and members of charitable or religious organisations might be willing to help you. Your Alzheimer’s disease organisation will be able to give you more detailed advice about the availability of this kind of care near where you live and whom to approach. It may also have details about meetings of carer support groups (please see previous chapter and Section 5 for details.). It is a good idea to accustom the person with dementia to being looked after by different people early on in the disease. They may object a little and the people who help might not do things exactly as you would like, but everyone has to give a little to make the arrangement work.

Don’t take criticisms to heart

You may find that certain members of your family and friends are critical of the way you look after the person with dementia. They may comment that the house is not clean or that the person with dementia is not properly dressed. This may be because they are reacting to what they see at a particular moment but do not understand the overall situation or notice the gradual changes in the person’s condition. Their harsh criticism might also reflect their own feelings of guilt about not helping more. So try not to take criticisms to heart. If you and the person with dementia feel comfortable about the way things are done, carry on as you are. You might eventually be able to help members of your family and friends understand by involving them more in caring.

Seek human contact and try to break your isolation

Once you have arranged for some time for yourself, you are free to do whatever you please and temporarily put your worries to one side. At first you might jump at the chance of getting a good night’s sleep and then doing nothing all day. But, it would be a good idea to use the free time to break the isolation that caring may have imposed on you - get out of the house, have some fresh air and a change of scenery, meet people you may have not seen for a while, talk and think about something other than the disease and maybe get a bit of exercise. You could take up pastimes you used to enjoy and contact old acquaintances. If you have always socialised as a couple and find it difficult to socialise as a single person, you could try to find new activities which bring you into contact with other single people as well as couples, e.g. cards, voluntary organisations, evening classes, etc. Sport is a good way to keep yourself in shape and healthy whilst socialising. Even solitary sports like cycling and swimming can bring you into contact with other people.

But don’t cut yourself off unnecessarily. People who knew you as part of a couple may just feel a little uneasy about the disease but soon get over it. You do not need to stop people from coming round. Dementia is not something to be ashamed of. If you explain to people a little about the disease and warn them of behaviour which might otherwise surprise or shock them, there should be no problem. Having people round will give you the opportunity to talk to someone and may well be a pleasant change for the person with dementia. Apart from having guests don’t feel that you can no longer eat out in restaurants. Many restaurants have a quieter area which you could reserve in advance. Even if the person with dementia has difficulties eating, service personnel will probably be very understanding if you explain the situation to them.

Learn how to handle stress and relax

You might find it useful to learn how to handle stress and relax. There are several methods which can be learnt such as “autogenes training” (which involves going into a deep, controlled sleep which lasts about 3 to 5 minutes and from which you awake feeling refreshed), yoga, positive thinking and relaxation. Certain techniques involve learning how to do something on your own, whereas others are more social involving contact with other people. Participating in some kind of sport is another way to relieve tension, as well as improve your general state of health. Finally, laughter can be a good way to relieve stress. You may have already noticed in the course of caring how a tense situation can be transformed by a little humour.